C – Communication
– NLMSF DIRECT LIFELINE HOTLINE access for Patients/Caregivers/Families
– Weekly newsletters featuring research and support updates, well-being physically and emotionally
– Website resource information and assistance/guidance/resources for Research updates and Clinical Trials
– Podcasts on Specific well-being topics – coping, anxiety, resilience, caring for the caregiver, survivorship and more
A – Advocacy for the Patient-Family LMS Community
-Legislative advocacy with the Rare Disease Congressional Caucus, EveryLife Foundation, and the Rare Disease Legislative Advocates
-Resource reach out through collaborative partnerships with sarcoma research workgroups and advocacy organizations
-National and global meetings to attendance to represent the patient and family communities served by the Foundatio
-The NLMSF reached Congressional approval for National LMS Awareness Day – July 15 in 2016.
R – Research Support / Advocacy Initiatives
– the NLSF-SPAEN LMS International Research Roundtable – gathering 120+ researchers from around the world,
with 4 workgroups in progress throughout the year to address the most pressing needs for advancing research efforts and accelerating treatment options.
– Annual Funding support for well-vetted LMS-specific research projects.
E – Education Symposia/Forums
– Patient-Family onsite and virtual education forums – monthly
with the Patient / Caregiver Advocacy Roundtable and the Survivors Inspire Peer Network group meetings.
– Quarterly LMS Live – Research in Review patient meetings with the researchers
to directly discuss and ask questions about LMS -specific research presentations.